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Should I Re-Test?
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8 posts in this topic

Okay, here's my story:

All growing up I had the stomach flu every year until my late teens. I had bronchitis and strep a lot as well.

When I turned 18, I was a nanny for my aunt up in Michigan and suddenly developed a severe stomach issue; I lived on yogurt for several weeks. I went to the doctor and they did several tests, including a stomach x-ray that required me to drink a paint-like substance. Nothing. I don't know what made it subside, but after several months, it finally did. I didn't ever connect it to something I was eating.

In early college, I developed temporary paralysis and passed out a lot. I had several MRIs, CAT scans, and EKGs. Nothing. One doctor said stress, one said migraines, another said epilepsy. Stress did seem to affect it quite a bit, and I had a very rough few years in college. Lots of stress and trauma, and suffered from depression.

Still had the problem off and on for years, but have not had this issue for a couple years now. However, about a year ago or less, I suddenly had a major migraine and couldn't speak. I was taken to the ER from work and just given migraine meds. Getting two of my wisdom teeth removed seem to have helped that situation mostly, though I still get headaches fairly frequently.

2 years ago I fell and injured my knee at work. I went to an orthopedic, who told me I have arthiritis. I'm in my twenties.

About 2 or 2 1/2 years ago, I developed mild gas and bloating. Constantly. Pretty much 24/7. In the last few months it has gotten much more severe, including severe cramping. A few weeks ago my arms started turning purple and my hands were tingling and going numb. I had blood tests done and was told my vitamin D was low. Nothing I could find online attributed D deficiency to my symptoms, but what concerned me most was that my D was low at all. I have D in my multi-vitamin, which I take every day, and I also take an additional D supplement. I also drink a lot of D fortified milk (lactose free as of 5-6 months ago). I found celiac when I was researching causes for D deficiency.

I had my doctor test me for celiac and they took blood last week. I got the call today that my test came back NEGATIVE. But I have so many symptoms! Gas, bloating, cramping, constipation, fatigue, anxiety and depression (for no reason), and frequent infections (respiratory and urinary). Not to mention, the arthiritis in my twenties, and my medical history. No one in my family has been diagnosed with celiac, but one of my brothers has been describing smiliar sypmtoms to me. He turned 20 this year and has frequent stomach problems.

I've decided to pursue a gluten-free diet, regardless. But should I insist on a biopsy or another blood test? I just want to know why I'm sick all the time! I imagine my boss would too.....

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Insist on the biopsy before you start the diet. Not only is it a good chance to look for any other issues, but it might give you an idea of what is going on. Genetic test wouldn't be to far off either.

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You might want to get a bone density test done. Bone density is often low in untreated celiac disease.

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Hold off on removing gluten until you are sure all testing is complete.

Request written or electronic copies of the tests that were run. If you are unsure what they mean, post them here - many of us can help interpret. Many doctors only run one or two of the complete celiac panel.

I would push for complete blood tests along with an endoscopy.

Good Luck to you :)

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I'm in a similar situation, having lots of symptoms but every test comes back negative. The only thing that's shown up for me is low vitamin D and low ferritin, which seems odd since I've been taking high quality vitamin D3 supplements for years. The low ferritin was surprising because I cook with a cast-iron skillet and eat iron-rich foods, often with citrus or vitamin-C-containing things which is supposed to help it be absorbed.

All my symptoms can't be explained by vitamin D and ferritin being low. But all the tests come back negative. I had a relative who tested negative for celiac but later had to have intestinal surgery. She was diagnosed with celiac based on the damage they found to her intestine. I've heard of many cases of false negatives from looking around online, especially on these forums. Sometimes it's really hard to get diagnosed.

I know this process is really frustrating but do lots of research and don't give up!

I've found in my research that there's a correlation between epilepsy and celiac disease. My younger sister has blood-test confirmed celiac (her numbers were so high they didn't bother to do a biopsy) and she has migraines as well.

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Hold off on removing gluten until you are sure all testing is complete.

Request written or electronic copies of the tests that were run. If you are unsure what they mean, post them here - many of us can help interpret. Many doctors only run one or two of the complete celiac panel.

I would push for complete blood tests along with an endoscopy.

Good Luck to you :)

Thanks!! I requested the test results, so I should have them in a couple days. I also have an appointment with a GI today at 12:30. Crossing my fingers! Also, realized that I have recently developed pits in my nails (but no skin rashes) and hair loss, and this morning I have hives on my stomach area. Getting interesting! Lol. I also am struggling with depression pretty bad, but I am very hopeful.

Really, bottom line is, even if they come back and say "negative" again after the biopsy, I'm still going to treat myself as if I have celiac. I am confident it will clear up on a gluten-free diet.

Thanks so much for your input! I'll be back with test results later! Looking forward to becoming an active member here.

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I'm in a similar situation, having lots of symptoms but every test comes back negative. The only thing that's shown up for me is low vitamin D and low ferritin, which seems odd since I've been taking high quality vitamin D3 supplements for years. The low ferritin was surprising because I cook with a cast-iron skillet and eat iron-rich foods, often with citrus or vitamin-C-containing things which is supposed to help it be absorbed.

All my symptoms can't be explained by vitamin D and ferritin being low. But all the tests come back negative. I had a relative who tested negative for celiac but later had to have intestinal surgery. She was diagnosed with celiac based on the damage they found to her intestine. I've heard of many cases of false negatives from looking around online, especially on these forums. Sometimes it's really hard to get diagnosed.

I know this process is really frustrating but do lots of research and don't give up!

I've found in my research that there's a correlation between epilepsy and celiac disease. My younger sister has blood-test confirmed celiac (her numbers were so high they didn't bother to do a biopsy) and she has migraines as well.

Very interesting! Thanks for your feedback. I have an appointment with a GI today, so we shall see what happens. Also have an appointment later in December to get allergy skin tests. My low vit D is what started me on this research, because I have D in my multi-vit, take an additional D supplament every day, and drink D fortified milk, so I was like "what?" D didn't explain my symptoms either, but I've decided to go on the gluten-free diet (and probably diary free, at least for the first few weeks), no matter what the diagnosis is.

Thanks so much for your response!

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Thanks!! I requested the test results, so I should have them in a couple days. I also have an appointment with a GI today at 12:30. Crossing my fingers! Also, realized that I have recently developed pits in my nails (but no skin rashes) and hair loss, and this morning I have hives on my stomach area. Getting interesting! Lol. I also am struggling with depression pretty bad, but I am very hopeful.

Really, bottom line is, even if they come back and say "negative" again after the biopsy, I'm still going to treat myself as if I have celiac. I am confident it will clear up on a gluten-free diet.

Thanks so much for your input! I'll be back with test results later! Looking forward to becoming an active member here.

Low D and hives on my stomach that spread to my arms and feet were what finally helped get me diagnosed. I never had the rash biopsied - when I removed gluten it never came back.

Take pictures of skin issues and any drastic bloating - these were very helpful during my diagnosis.

Again - welcome - glad you have joined us :)

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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